Transplant part 2 (preparing while waiting, List of information and possible financial help)

(I got this information for all 5 of these blogs from the Cleveland Clinic's website regarding their transplant program.)

How can I prepare myself while I’m waiting for my transplant?
Waiting for a donor organ can be a stressful experience, especially because the amount of time you’ll have to wait is unknown. There are many things you can do to prepare yourself while you wait for a donor lung to become available. Changing your lifestyle before your transplant will help you adjust after the transplant.

Below are some guidelines to follow.

Take care of your health
•Try to stay as healthy as possible by carefully following the recommendations of the Lung Transplant Team.
•Take your medicines as they are prescribed and notify your transplant coordinator if antibiotics are prescribed, if your steroid dose changes or if you are hospitalized for any reason.
Follow the dietary guidelines provided by your dietitian
•Weight management is very important while waiting for your transplant. Your dietitian will recommend a weight range for you to maintain.
•We require that you quit drinking alcohol, especially if you drank heavily in the past (two or more drinks per day, including beer and wine).
•Perform your breathing exercises and maintain your exercise program, as directed by your physician.
•Stop and rest if you experience any discomfort, shortness of breath or chest pain during any activity.
•A physical therapist can work with you to plan and develop an exercise program that will give you the greatest benefit before and after transplantation.
•Continue your enrollment in a local pulmonary rehabilitation program and remain firm in your commitment to the program.
Keep all of your appointments with your health care providers
Until your transplant, you will meet with the transplant pulmonologist and transplant coordinator every two months in order to evaluate your overall health.

•Make sure you are available
•It is important for the Lung Transplant Team to know how to get in touch with you at all times.
•Your Transplant Team should have the telephone numbers of where you can be reached 24 hours a day, as well as the names and telephone numbers of family members who can reach you.
•You must obtain a pager or cell phone so we may contact you immediately should organs become available for your transplant.
•We encourage you to purchase a telephone answering machine with remote access so you can check your messages frequently when you are away from the telephone.
•Be sure to inform us of your pager and/or cell phone numbers.
•If you plan to be out of town (even for one day), give a phone number to the transplant coordinator.
•Your transplant coordinator may recommend that you stay within a certain geographic range.
Be prepared with transportation
•When you are placed on the organ waiting list, your first responsibility is to plan how to get to Cleveland Clinic as soon as you are notified that a lung is available.
•Prepare yourself for this call by making the necessary arrangements for transportation well in advance.
•If you live less than 1-1/2 hours away from Cleveland Clinic, the transplant coordinator on call will arrange transportation for you and one family member.
Be prepared by packing your bags in advance
•You'll need to be ready to leave as soon as you get the call that a lung is available.
•Be sure to include your insurance information and a 24-hour supply of medication.
•If you need oxygen, make sure you have enough to get you to and from the hospital (in case the surgery is cancelled).
•All necessities, such as pajamas and bedding, are provided and laundered for you. However, you may prefer your own pajamas, slippers, robe or other comfortable clothing (provided you have someone to do your laundry for you).
•Please bring your toothbrush, toothpaste and any other toiletries you may need.
•You should expect to stay in the hospital 2 to 3 weeks.
•Because the hospital is not responsible for lost or stolen personal items, please do not pack valuable jewelry, credit cards, checks or large amounts of cash.
•You also may want to pack a book, magazine and a family picture or other comforting reminder of home to keep at your bedside.
Learn all you can about the transplantation process and ask for support
•Ask your social worker about support groups and other resources so you can receive more information and learn about other transplant recipients' experiences.
Occupy yourself
If possible, don't turn your back on your favorite activities. You can spend the time doing what you enjoy. Now may be a perfect time to learn a new hobby or continue your old hobbies. The time will pass quickly if you spend it doing things you enjoy.
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List of possible expense or travel help

American Society on Transplantation
P.O. Box 1709
Alexandria, VA 22313
Ph: 800.ACT.GIVE (800.228.4483)

CenterSpan

Children’s Organ Transplant Association, Inc.
2501 COTA Drive
Bloomington, IN 47403
Ph: 800.366.2682

Division of Organ Transplantation
Health Resources and Services Administration
5600 Fishers Lane, Room 11A-22
Rockville, MD 20857

Transplant Recipients International Organization
2117 L Street NW, Suite 353
Washington, DC 20037
Ph: 800.TRIO.386
email: triointl@aol.com

National Transplant Assistance Fund (TRIO)
3475 West Chester Pike, Suite 230
Newtown Square, PA 19073
Ph: 800.642.8399 or 610.353.1616
Fax: 610.353.1616
email: NTAF@transplantfund.org

Organ Transplant Fund, Inc.
1102 Brookfield, Suite 202
Memphis, TN 38119
Ph: 800.489.3863 or 901.684.1697

Partnership for Organ Donation
Two Oliver Street
Boston, MA 02109
617.482.5746
email: info@organdonation.org

Second Wind Lung Transplant Association, Inc.
300 South Duncan Avenue, Suite 227
Clearwater, FL 33755-6457
Ph: 888.855.9463 or 727.442.0892
email: heering@2ndwind.org

Transplant Foundation
8002 Discovery Drive, Suite 310
Richmond, VA 23229
804.285.5115
email: otfnatl@aol.com

Transplant Recipients International Organization (Cleveland Chapter)
P.O. Box 210053
Cleveland, OH 44121
Ph: 216.473.8979

TransWeb

United Network for Organ Sharing (UNOS)
Ph: 800.24.DONOR (800.243.6667)

Other Resources
Angel Flight America
P.O. Box 17467
Memphis, TN 38187-0467
Ph: 901.332.4034 or 877.858.7788

Cystic Fibrosis Foundation
6931 Arlington Road
Bethesda, Maryland 20814
Ph: 301.951.4422 or 800.FIGHT.CF (800.344.4823)
email: info@cff.org

Friends' Health Connection
P.O. Box 114
New Brunswick, NJ 08903
Ph: 732.418.1811 or 800.48.FRIEND (800.483.7436)
email: info@friendshealthconnection.org

National Heart, Lung, and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Ph: 301.251.2222

Note: Cleveland Clinic does not necessarily endorse the information distributed from these organizations or contained on their websites. This information is for your reference only.

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